Last week George officially moved on to a part of maintenance that allows us to spend less time at the hospital. We still have to visit just as much as he still needs his blood tests, but we don’t need to hang around as much for consultant appointments. Appointments with the doctor are still fortnightly but we now have every other appointment over the phone. We discuss George’s blood test results, how he’s been in himself and they then tell us what chemo dose to adjust to…. feels like a lot of responsibility but really, we’re writing on a document what the new dose is, and following that. I believe this isn’t something that’s available to every family (before any oncology friends/followers wonder what’s going on!), it depends on diagnosis, treatment and the stage your little one is at, I’m also not sure it’s something that’s offered at every hospital either.
George’s “good” cells are doing well at the moment so Dr Keenan increased his chemotherapy dose again. They need to be suppressed a little (with chemo) to make sure any leukaemia cells don’t have a chance to multiply.
Everything else is the same with treatment with regards to going to hospital when his temperature gets to 38 degrees, he still needs his port flushing monthly, has theatre every 12 weeks for spinal chemo and at the end of the day, if there’s anything we’re concerned about, we go back to fortnightly doctors assessments or drop everything and go if it’s serious!
It’s the end of the George’s first school term, Harriet’s first term in Year 4 and Oliver’s last ever school year in a primary school! Treatment and appointments have only really taken George out of school for a total of 2 days as we’ve managed to get him back in for a half day after his appointments. There’s been a week’s worth of a medicine he had to take as there was a suspected chicken pox outbreak but other than that, he’s not been sent home ONCE since starting in reception… he’s not had any temperatures during school time (we’ve had a couple of weekend visits) so we couldn’t have hoped for a better start to big school for Georgie-Roo.
Just as we managed to get into the swing of juggling hospital visits, homework, spellings, reading, after school clubs and classes etc for all three kids, we had the pleasure of George’s class dog-teddy, Doodle, coming home for the weekend. Those with kids who’ve experienced a class teddy before will understand what a joy that is! And for added pressure, we were the first to have Doodle this year so had to set the precedent…. you’re supposed to record/photograph your weekend’s adventures, people take him on their holidays, he’s been to Lapland in previous years for God’s sake! How were we going to make a weekend in pjs scratching our arses look like an educational adventure?!
Well…. we didn’t! but luckily for Doodle, he wasn’t due back in until the Wednesday and George was due at Alder Hey the same day. So off we went badgering every member of staff we dealt with in Oncology for a photo. Thank you to the lovely team for being so photogenic 🙂 you know you’ve made it in life when you feature in the Rooza blog 😉
It’s now half term and I won’t know what’s hit me with all three of the little loves around. We’ve got lots to celebrate as all three of them are doing great at school… it’s also D-Day for the final high school submission for Oliver, who we now know passed a grammar school entrance exam – you think choosing a primary school is a challenge? wait til you’re up to high school choices with over-subscription, catchments and feeder schools to deal with <insert arrrggghhhh face here>.
We’re kicking off half term, leaving Daddy and Sugar behind to visit our cousins in St Albans and hopefully will hit the zoo. Wish me luck for tomorrow on the M6 with a gang of kids whose current favourite pass time is worse than them all arguing! They sing out of tune HYMNS full pelt together!
Tomorrow, Wednesday 21st September 2016, will be George’s first trip to theatre for a lumbar puncture to give him spinal chemotherapy since he started big boy’s school. He had to come out of school today to go to Alder Hey for a blood test in case he needs any blood transfusions before tomorrow’s procedure.
I’m sure if it was one of us adults going to theatre under general anaesthetic we’d probably be in bed for the week following, feeling sorry for ourselves. Providing all goes to plan there’s no doubt that George will be back trotting into school on Thursday. When I say trotting, I mean, whining for me to carry him in to school because his “legs hurt”, only to spend the day running and riding bikes around with his friends with no pain at all… funny that.
I’m not really nervous about the actual procedure as we all know the drill now, particularly George whose only thoughts are “will I get a present if I stay lying down afterwards?” (this is to prevent the chemotherapy reaching his brain and giving him severe headaches if you remember). I’m more nervous about his blood test results and where they’re up to.
George has been on reduced chemotherapy for 5-6 weeks now because his neutrophil count isn’t where they want it to be, it’s still quite low. Neutrophils fight infection and are “good” cells. He had a bad cough, it reached its peak and has gone now but his neutrophils have still remained low. He’s borderline severely neutropenic… not that you’d be able to tell by looking at him. Reduced chemo is not what we want, shite as the side effects can be, we want to feel like he’s on a decent dose to prevent relapse, but then too much chemo is what is likely to knocking his neutrophil count down! you can see the issue here.
We know that relapse whilst on treatment would be quite rare, it’s when he comes off treatment after the 3 years that the chances of it returning increases – makes sense.
I read a lady’s angry rant on a FB support group for parents of children with cancer recently. This lady was p*ssed off because her child has just finished treatment, and other non-cancer-parents keep saying things like “well at least it’s all over” and making references to being able to relax now. No. Folks, be mindful that coming off treatment, depending what type of cancer they’ve had, will be worse for that Mummy or Daddy (or person themselves!) than a lot of their experiences so far – and there will have been some baaaaaaad times believe me. Yes, their child may no longer experiencing the side effects of chemo, but oh my god, relax!? I’m sure it was completely innocent comment, people just don’t know what to say.
George still has years of chemotherapy treatment ahead of him. We have this dodgy blood count which will probably just be nothing, but I’m constantly on pins, looking for a limp, fretting over a temp, worrying when he doesn’t feel like eating his tea or just looks slightly off colour. The first thing that pops up into your mind is that the leukaemia is back.
George finishes his treatment in the Summer of 2019 all being well. I hope that, if only the followers of my blog take something from this post, that will be a few more people who will be a little more mindful of the language used when speaking with the parent of a little survivor (or ANY cancer survivor for that matter). Yes we’ll reach milestones, yes we may now have a new lease of life, we may view the world completely differently. But we’re not all kicking back and chilling because our child has a full head of hair, or is attending school, or their last dose of chemo has been taken. The constant fear of relapse is always in the back of our minds, whilst getting on with life, living it to it’s fullest with those we love.
On a lighter note, this week has been a week filled with having places to be and relaxed doggy walks… yeah it doesnt sound like me, the relaxed dog walks that is. In reality, the dog is currently refusing to walk unless it has canine-company. I’ve somehow ended up over-socialising my bloody dog as if that’s a thing!! She already looks like me, now she can’t cope without mates like me! So we’ve been practising going out without half the dogs in Warrington… Look at her face on that photo, that’s what I’m dealing with.
Kids and school-wise we’ve had 3 lots of homework, we’ve got 3 lots of reading, 2 lots of spellings, basketball training, basketball matches, karate, swimming lessons, art and craft club and running club this week. That’s around hospital twice for George, shopping and we’re about to start viewing high schools for Oliver… I’m doing my best at empowering the kids, teaching them right from wrong, teaching the dog not to jump up and nip anything that moves or drag its arse along the floor.
Suffice to say it’s Tuesday and the gin/wine/turps is calling me….
A few months back Kerry, a lovely little friend of Harriet’s asked if she could get her hair cut to raise money for George. Harriet jumped at the chance of doing some fundraising too and together with Kerry’s mummy, we started our little campaign.
It became obvious after a few days that there were more little girls in the school who also wanted to get involved and our team grew. We’ve organised ourselves this week, finalised the details and confirmed we’re choosing The Little Princess Trust, the charity who create real hair wigs for children with cancer, to raise money for and to donate the hair to.
George and I met a lovely young lady at Alder Hey not so long ago called Erin, who also has Acute Lymphoblastic Leukaemia. She had lost her waist length hair within weeks of diagnosis and had received a gorgeous real hair wig from The Little Princess Trust. We’ve seen first hand what a difference it’s made to that little girl – imagine what it must be like as a ten year old girl losing all of your hair. TLPT also help children who’ve lost their through other conditions, like alopecia.
Our team has grown and there are now FOURTEEN very brave girls from Woolston Community Primary School going for the chop – at least 7 inches of hair is being cut from each person plus there are three big sisters/local friends and two Mums getting theirs cut too! That’s EIGHTEEN altogether!?
The school community and George’s preschool have been amazing at pulling together for us as a family, raising money for us and causes close to our heart. This selfless act by a large group of girls/ladies is yet another positive story to add to our ever growing collection.
The fundraising page can be found here – Thank you to everyone involved – our Harriet, Kerry Hennie, Olivia and Grace Wilson, Kira Linley, Rihanna Thorpe, Libby Naylor, Erin Osborne, Imogen Cairns, Isla Dale, Payton Chesters, Charlie Fletcher, Katie Rudge, Abigail Shaw, Bianka Toth, Becky Coates, Charlotte Isherwood, Sarah Bursill and Michaela Hewitt! The photo of you all together with your bobs and ponytails in hand in a couple of weeks is going to be an emotional one… Harriet has such a gorgeous group of friends.
Speaking of Harriet and gorgeousness, she’s messy, quirky and a bundle of energy ALL of the time, traits that I wouldn’t change for the world (ok maybe when i’m hungover….), she has a huge heart and spends most of her time in a fantasy world full of “pink fluffy unicorns dancing on rainbows” so she tells me. She’s barking mad, feisty and when we talk about how her day has been, she can always tell you something amazing that happened. Even if she found a stone, named it Fred and it’s now in a special box in her bedroom!
There are days when she’ll share something that’s made her sad. Her favourite teacher is leaving and she’s quite emotional about it. It’s been a tough year for my little girl and I feel Miss Taylor has supported her in school just by being there for her when she’s been most vulnerable. I know Harriet loves her to bits I just want to say thank you for all that you’ve done make life a little easier for Harriet, I know she’ll never forget you and I hope you inspire my daughter to travel one day too x
Here is a piece of artwork Harriet created recently which I think says it all really, it’s up on our wall and is the reminder I need sometimes that I can’t be doing too bad a job of being a Mummy.
It says “It doesn’t matter what you look like on the outside, it’s what’s on the inside that counts”
She thought of that herself and says it’s for her Georgie.
I know some people sponsored Harriet the last time I circulated a fundraising page (which has been added to this campaign!) but if you didn’t, and would like to, you can do so here.
On Tuesday we headed into Alder Hey for George to have a blood test. This was to make sure his counts were high enough to get started on the new “Delayed Intensification” phase. We got a call later that day to confirm we needed to go in the following morning as planned as his counts were great.
Wednesday, Daddy took George into hospital first thing to get ready for theatre for spinal chemotherapy whilst I took Oliver and Harriet to school. I then met them there just as they came out of 3B Daycare. having had his gripper inserted into his port already, and was heading to the theatre waiting room. The nurses were very impressed with how calm George was as they put the needle into “Barry” – he is so unbelievably brave…
George was very excited to be able to ride the trike again however he had to be herded into a corner as it was quite busy in there this time and we don’t want to risk him catching any nasties.
He went into theatre with no fuss, with his usual lovely anaesthetist who was asking if she could have his Mummy’s autograph as she’d heard me on the radio! <cringe> Georgie gave me a kiss goodbye and went off to theatre smiling.
We grabbed a coffee whilst he was under anaesthetic and then headed back just in time to be called to collect him again. He came out and was happy still, staying lay flat asking for food and to watch TV as usual. After a while, Damo decided he was going to head back to work as all was well and once George has had his observations done for a an hour or two, we can usually go home.
Unfortunately and typically! once Daddy had left and George was able to sit up, he started to complain of bad headaches and was crying. This was new to us as he’d never experienced this before… he just kept lying back down saying he wanted to go home. Kev, the ANP who was on that day, immediately prescribed morphine for him. It took what felt like an eternity for the pharmacists to sort, when in reality it was probably no time at all. I was pacing around with him crying in my arms as he didn’t want to be on the bed any longer.
I was starting to stress as it was hot, he was in pain and I’d also realised George’s buggy was in the car and he’d wheeled in on his trunki. There was no way he was going to wheel back out and I now had all his meds, a trunky suitcase, my coat (it was stifling in there!), my bag and George to carry out.
Kev told us we weren’t going to be able to go home until George had stopped having headaches 🙁 a very disappointed Georgie was starting to get more distressed as was I. The headaches were due to the chemotherapy he’d had injected into his spinal cord which travels into his cerebral fluid.
I was giving him a “cuggle” on my knee as he then puked all over himself and me 🙁 this is a side effect of the anaesthetic. So he wasn’t having a good time of it all. I had sick down my leg and in my slip-on shoe. The pungent aroma of wotsits/fresh orange was radiating outwards from us and I was starting to wretch.
Luckily Mia’s mummy who was in the cubicle next to us grabbed us some paper towels while Debbie came and cleaned around us. It was grim and I can still smell it now. George fell asleep in my arms straight afterwards so I sat for a minute with him, then moved him onto the bed. One of the lovely playworkers came over and sat with George while I cleaned myself up as much as I could and even managed to run in my squelchy shoe to the car for the buggy.
It was a huge relief knowing I wasn’t going to struggle out of the place and Pip, another lovely playworker, also grabbed George some brand new minion PJs to change into 🙂
Damo then had to come back out of work (in Manchester) to pick Oliver and Harriet up from school as we weren’t going to make it back in time. My heart jumped when George started stirring and I was holding my breath waiting to see how he felt “please be ok, please be ok”, he sat up looking tiny with his dody in and said “it’s gone!? my head isn’t hurty!? it’s magical!”
It’s magical…. could he melt your heart any more. He literally threw his legs over the side of the bed and walked round to me for a hug. Then he picked up his swabs (swab sticks to test for MRSA etc) that we’d already done and walked over to the nurse who had been looking after him to hand them over.
I’ve no idea what he was saying, but he was talking to her as he handed them over, again he looked so small, the nurse crouched down to him and put her hand on his shoulder and shot a little smile my way… well that was me gone then, I was in bits. I’d managed to keep it together until then… I think it was relief.
So we went home. We had a class to get Oliver to and I needed to pick up Harriet’s birthday present and wrap everything. I slept well that night. Day 1 done…. only the remaining 8 weeks to go.
I’d like to say the following day was easier but it wasn’t. We were up early for Harriet’s birthday, she was a giddy kipper and I had loads to remember… sweeties for school and all that. Daddy went to work and George and I dropped the older kids off. I’d planned ahead with a spare set of clothes each in the trunki this time and also knew I’d take the buggy straight up with me so was feeling confident.
All was going well until about 15 minutes into the journey to Liverpool, just near the M57 where the motorway splits into three, at approximately 70mph with no sick bowl to hand, poor Georgie brought all his breakfast up. He cried, I tried to reassure him whilst panicking he’d choke and trying to not kill us by watching the road ahead. I had no idea where I could come off the motorway so decided we’d just plough on.
Of course, with no baby wipes in the car, there was not one parking space under cover so the car sat there in the blazing sun ALL DAY caked in puke. I stripped George on the car park, he cried, I wretched, I cried, he wretched. I had nothing to clean him up with (used all the wipes the day before!!) so he put his one clean outfit on, over the sick.
We were a sight for sore eyes when we walked in again. The nurse directed us to the shower where we could get cleaned up and gear ourselves up the drip and an hours worth of IV chemo. He carried on being sick for the time we were there and was prescribed anti-sickness drugs to take as well as his morphine.
He looked like crap and obviously felt like crap and it was sad sitting there knowing that it was this medicine causing him to feel this way. It’s a horrible feeling that I wish I could take away. But amongst all this, I received a really aptly timed picture from George’s preschool saying “Go George!” from all his little friends and teachers. That day they’d had a Superheroes and Princesses walk for George… I shown him the picture and cried a little.
Thank you everyone – not only for your walk, and the funds you’ve raised, but for that special moment in hospital when we both felt sad – you really lifted the mood.
The doctor decided to leave the gripper in “Barry” as he may have needed fluids the following day because of the vomiting. Damo needed to come out of work again to look after Georgie so that I was able to collect Harriet up from school on her birthday (and Oliver of course).
The car was as you would imagine when I got back to it. Thank you to the random stranger who gave me a packet of wipes from his boot… He copped for the whole story in the lift so probably felt obliged!
George was surprisingly much like his usual self once home, of course he always is once Daddy is around! We then had classes to get the kids to again then Pizza Hut for tea with Oliver and Harriet’s Daddy. Damo and Georgie stayed at home.
We had Friday off, when I had the pleasure of cleaning the dried vom out of the cracks of the car seat and also had our friends Dawn and Fin visiting during the day. George had a little play on the park for 20 mins, so that was a nice change. Harriet’s little friend Lola came to visit after school with her birthday present and with her mum Kath who I got to offload some of my stress to…
Yesterday, Saturday, George’s sickness had died down but he had to go back for an injection in his bum and have his gripper taken out. I honestly couldn’t face another trip to Alder Hey and see him crying, which I knew he would, so I stayed with Oliver and Harriet and Daddy took George. They had to wait around for an hour following the injection in case he became ill.
Meanwhile Oliver and Harriet enjoyed themselves at our friend’s house, the Appletons. Thank you for looking after us Mrs A. George came home and was in a good mood and told me all about it before carrying on with his day.
So next week here we go, Week 2 looks slightly more promising without a theatre trip, I’m going to pack the entire house when we go and make sure we have sick bowls within easy reach in the car. It’s a learning curve!
Here’s a little pic of him with his latest beads, he’s come so far and is still smiling 🙂